New To Celiac...now What?

[Irishgirl]

I am 50 years old and have been plagued with GERD and GI problems all of my adult life. I have been under a lot of stress this year and my GI problems...bloating, gas, horrible reflux with chest pain, etc. I buy Maalox-plus by the gallon and have taken expensive drugs ie. Protonix, Prilosec, etc. Nothing has helped for all these years. have gained a lot of weight over the past 9 years, mostly from "emotional eating". I love flour tortillas, crackers, cookies, etc. all the good tasting Gluten stuff! That is how I deal with stress. Not the healthiest coping mechanism for a nurse! I have been screened by Endoscopy?Colonoscopy for years, since both my parents died from GI Cancer (Mother-Colon and Father -Stomach)

I have felt so miserable for months, I finally went to Weight Watchers to get a handle on my weight. I also went to my Gastroenterologist, His Physician Assistant had the insight to order an IgA ( immune system test) blood test. This came back low. I was scheduled for an Endoscopy/Colonoscopy, a small bowel biopsy was taken. First time I have had that done in all these years of getting scoped! I get a call the other day, that the pathology of this shows Celiac disease. I am in shock, and overwhelmed! All the foods I LOVE, including a nice cold Beer are now "off-limits". This diet seems very restrictive, and the gluten free products are expensive, don't taste that good and most with high fat content. This is tough on weight watchers! I went to the Health food store and was in sticker shock! I was so down, I ate a large wheat laden soft pretzel...and spent a very miserable night feeling like I was 10 months pregnant! I had a "light bulb moment".

Well, I am going to see my doctor tommorrow to go over all this, and they also want me to see a Nutritionist.

I could use any help and guidance! In my quest to learn more about this, I feel lucky to have found this site, I am new to this message board stuff!

Thanks!

[Sarah8793]

Welcome,

Everything that needs to be avoided is overwhelming at first and learning to eat differently does require a lot of experimentation and patience. Once you go completely gluten free you will be eating in a much more healthy way and over time you will lose the craving for all of the foods you mentioned. Your tastes will change once your body is nutritionally balanced. A few years back I did WW and found that I wasn't really eating healthy, because I was just trying to figure out how I could have the junk without using too many points. But that was me. Anyways, the longer I eat gluten free, the more I find wonderful substitutes and I am quite happy. The only part that is difficult for me is social events that involve food. Hang in there it will get better. There is a wealth of information in this forum and super people!

Sarah

[Daxin]

It can be quite daunting at first, but you will get through it. This is not the end of the world.

There are many gluten free foods available out there, at whole food markets etc. I have also been able to find many gluten free versions of the foods I love. (tortillias, waffles etc)

It gets easier every day, and I have found the advise and insight on this forum to be a great asset and HUGELY helpful to me during my recovery and healing process. I have only been dx'd for about 6 weeks now, and am still finsing it hard to adjust. I sitll get cravings for foods I can not longer eat, but they are fading slowly.

As the healing continues, you will find yourself feeling better and better each day. I am glad you finally have answers and can now being to take steps to heal.

Welcome to the forum. I only hope you find as many answers here as I have.

Ryan

[marycubs]

Hi Irishgirl and welcome !

This is a great forum to look at - there are many knowlegeable people here that can help you out. I do not tend to participate often - but come back to read the tips and wisdom of others at least weekly. There's a Delphi list of what foods are gluten-free (celiac3270 can help you with it) and a newbie package that Nini can send you.

I was diagnosed a year ago after going through a few years of increasing symptoms (bloating, diarrhea, anemia, fatigue, depression, etc). I recognize I was lucky not to have suffered longer. While my symptoms are much better than a year ago, I find I am still not to where I want to be so am now exploring further testing to check for other auto immune disorders.

I don't really eat too many of the gluten-free foods - due to the expense - but treat myself now and then to pasta (tynkyinada is best to me) and flax seed bread by Kinnikinnick. I also like Ener-G sesame pretzels. While the diet may seem bad at first, you really do get use to it. I'm eating healthier than ever - fruits, veggies, plain chicken, fish are all okay. Be aware that many processed foods (canned soups, salad dressing, even some OJ and lemonade) have gluten added to them. You'll need to educate yourself by reading this board and I suggest Danna Korn's book Wheat free Worry free, and if you want more technical in depth information, Dr. Peter Green's book Celiac Disease - A hidden epidemic.

Here's a link that also may help: Open Original Shared Link - check out celiac disease info for patients and the one for Doctors - it speaks to what follow up tests should be done.

Remember - you are not alone in this - there are more and more people being diagnosed (finally) with celiac disease.

hang in there

Mary

[eKatherine]

Try not to focus on the foods you can't have or the gluten-free foods you would be trying to replace them with. Think about the good whole foods that are available to you, and plan your diet around meat, vegetables, fruit, nuts, rice and any other grains you can tolerate, keeping gluten-free food replacements as a treat.

[gdobson]

Hi,

I totally agree. I have been Gluten Free for 5 years. And I have relatively no cravings for stuff I can't have. And I have been able to find substitutes for the things I really want (I have a blueberry coffeecake recipe people have been known to arm wrestle for). At first I remember the foods seem to taste different (aftertaste and texture), but either I got used to them or the foods have just gotten that much better over the years.

You will be surprised at all the products gluten hides and how easy it is to contaminate your own food by using a toaster or a microwave. Be careful. But it gets to be second nature. And the ultimate reward of feeling better makes up for everything. I had terrible stomach pain for 10 years along with a "buffet" of other symptoms.

Good Luck!

[tarnalberry]

The gluten free substitutes can get expensive (we don't have the economy of scale to help us with prices), but you don't have to eat them. You can make almost anything out of whole, naturally gluten-free, fresh foods - and it's quite tasty and healthy. (And that cooking does not have to take forever.) Yes, it may mean more cooking than you've done in the past, but that can be a *BIG* help with weight loss. It's also the easiest way to avoid contamination.

Welcome to the boards, and I hope you have the time to read through some of the posts and see the fabulous advice that's available here. And don't hesitate to ask more questions. :-)

[taz sharratt]

  eKatherine said:

Try not to focus on the foods you can't have or the gluten-free foods you would be trying to replace them with. Think about the good whole foods that are available to you, and plan your diet around meat, vegetables, fruit, nuts, rice and any other grains you can tolerate, keeping gluten-free food replacements as a treat.

good advice, keep gluten free foods to minimum as not only for a treat but also as they can be very expensive and you can end up relying on them as your main food which is not good as a lot of these foods can be high in fat. you will learn to adjust to what foods work and where is the cheapest etc, it just takes time, its a big learning process but the benefits outway the negatives. good luck !!

[Irishgirl]

THANKS TO ALL OF YOU!! It helps to know I am not alone in this! I have a lot to learn!!!

[floridanative]

If you had a biopsied dx of Celiac you can get a free gluten free goodie basket from the Celiac Center at the University of Chicago. Go to www.celiacdisease.net and you'll be able to find their phone #. When mine came I cried - it was such a sight for gluten deprived eyes! Also, I could not have gotten through this new diet without the Clan Thomspon software - www.clanthompson.com - There is a standard version and one that gets updates a few times a year. I got the updated version but when I renew next year I'll get the standard. I know how to read labels now, which food makers mark gluten clearly and so forth but that takes a while to learn so for me I had to have all the help I could find in the beginning. Also, I found the Dephi list (free) to have lots of inaccuracies in it since it's so old.

[kbtoyssni]

I used to crave gluten-filled foods all the time. I just realized the other day that my cravings are gone! Your body is probably addicted to gluten like mine was, so if you can manage to go a few months without gluten products, it's likely you'll stop having cravings like this.

The diet does seem restrictive at first - especially when you go through your cupboard and have to throw out everything because you can't eat it. I've been gluten-free for ten months and I now find that I eat everything I used to, just in gluten-free versions. Some things like bread and pasta you'll have to buy gluten-free substitutes for. Other things you learn which brands are safe. I'm sure it's overwhelming right now to look in the fridge and not know if things are gluten-free, but give it time and you'll figure out the safe brands. A lot of my friends ask me how long it takes me to grocery shop. In the beginning it used to take me hours because I'd be reading every label, but now it doesn't take me any longer than it used to.

If you're anything like me, you'll feel so much better in a few months and be so grateful for gluten-free that you won't care that it's slightly more inconvienient and harder to figure out what you can eat. At this point, gluten-free is just what I do to live a normal, healthy life.

Good luck, and welcome to the board!

[lindalee]

  gdobson said:

Hi,

I totally agree. I have been Gluten Free for 5 years. And I have relatively no cravings for stuff I can't have. And I have been able to find substitutes for the things I really want (I have a blueberry coffeecake recipe people have been known to arm wrestle for). At first I remember the foods seem to taste different (aftertaste and texture), but either I got used to them or the foods have just gotten that much better over the years.

You will be surprised at all the products gluten hides and how easy it is to contaminate your own food by using a toaster or a microwave. Be careful. But it gets to be second nature. And the ultimate reward of feeling better makes up for everything. I had terrible stomach pain for 10 years along with a "buffet" of other symptoms.

Good Luck!

Hadn't heard about the microwave. What do you do about that? Thanks,LL

[Jean-Luc]

  Irishgirl said:

All the foods I LOVE, including a nice cold Beer are now "off-limits".

Ciders are good!

And a couple of gluten free beers are on the market. Not sure where you live, but New Grist is an option.

[TCA]

Welcome! I hope you feel better soon! It's probably best to start off with unprocessed fruits,veggies, and lean meats for weight Watchers. Anyway, here is a thread I started a while back that might be helpful

Open Original Shared Link

[GFBetsy]

  Irishgirl said:

I love flour tortillas, crackers, cookies, etc. all the good tasting Gluten stuff! That is how I deal with stress.

I am in shock, and overwhelmed! All the foods I LOVE, including a nice cold Beer are now "off-limits". This diet seems very restrictive, and the gluten free products are expensive, don't taste that good and most with high fat content.

Just a couple of things that may help:

Make a list of all the things you CAN eat. This list will be a WHOLE lot longer than the list of things you can't eat . . . it's just that (right now) that list of "can'ts" keeps dangling itself in the forefront of your brain. If you start to look around for all the things that are still available, you start to realize that things aren't quite as bad as they first looked. Also, if you are anything like my family, there are lots of Gluten Free things you gravitated toward anyway . . . my mother (Dx'd 3.5 years ago) also loved cookies, cake, etc., but dinners were gluten-free more often than not. She wasn't consciously trying to avoid wheat, but she the things she "just liked to eat" were generally gluten free. We ate tacos (with fried corn tortillas) almost once a week. When we made burgers at home, we never had buns. We had homemade chili with rice, spanish rice, chicken fried rice (with a soy sauce that happens to be gluten-free), and baked potatoes ALL THE TIME. And, again, it wasn't because anyone was trying to eat gluten free - these were things my mom "just liked" (probably because gluten made her feel slightly sick ).

Secondly, there are recipes out there that make cookies/cakes, etc. that honestly taste just as good as "regular" items. It can be a little difficult to find them, but (if I were you) I'd find someone who's advice I trust and try some of the recipes they recommend. I have some recipes that no one can tell are gluten-free, but I don't want to force them on you if you'd rather not have them ! Just knowing that such things are out there may be enough for right now. (If you do want them, though, just let me know). Oh, but when it comes to bread, I would recommend Kinnikinnik's mix (which is readily available in most health food stores) over most pre-made loaves. Just a tip!

Good luck!

[Cornhusker]

  lindalee said:

Hadn't heard about the microwave. What do you do about that? Thanks,LL

Make sure it's clean.

[natalunia]

There is a yahoo group that is specifically for doing Weight Watchers while gluten free. They are an active group and you should get some good info. I am a member, but not doing WW right now.

Here's the link to that yahoo gluten-free WW board: Open Original Shared Link

I hope that helps!

[kabowman]

And I use the microwave before anyone else so their steam (laugh now but I have gotten sick) was absorbed into my gluten-free dressing leftovers after thanksgiving.

[Cornhusker]

Not laughing...but I wonder what the ppm count is on gluten-laden steam.

[jerseyangel]

  kabowman said:

And I use the microwave before anyone else so their steam (laugh now but I have gotten sick) was absorbed into my gluten-free dressing leftovers after thanksgiving.

Kate--I never knew about this! Sometimes my son defrosts a bagel in there. Do you do something to clear the air (so to speak) or anything?

[lindalee]

  kabowman said:

And I use the microwave before anyone else so their steam (laugh now but I have gotten sick) was absorbed into my gluten-free dressing leftovers after thanksgiving.

You must keep a very thorough journal to have concluded that. WOW, I'm impressed! LL

[Irishgirl]

  gdobson said:

Hi,

I totally agree. I have been Gluten Free for 5 years. And I have relatively no cravings for stuff I can't have. And I have been able to find substitutes for the things I really want (I have a blueberry coffeecake recipe people have been known to arm wrestle for). At first I remember the foods seem to taste different (aftertaste and texture), but either I got used to them or the foods have just gotten that much better over the years.

You will be surprised at all the products gluten hides and how easy it is to contaminate your own food by using a toaster or a microwave. Be careful. But it gets to be second nature. And the ultimate reward of feeling better makes up for everything. I had terrible stomach pain for 10 years along with a "buffet" of other symptoms.

Good Luck!

Thanks for the encouragement, what are my chances of "arm-wrestling" that Blue Berry Muffin recipe from you?

Irishgirl

[Luvs to Scrap]

  gdobson said:

(I have a blueberry coffeecake recipe people have been known to arm wrestle for).

I'm no good at arm wrestling but am hoping that you could share the recipe with me too. My celiac boys both LOVE blueberries. Thanks! Kendra